Previous events have been held in London (July 2017), Bristol (March 2017), Salford (November 2016), Sheffield (September 2016) and Birmingham (January 2016). Clinical members of the ADPKD Rare Disease Group attend and talk at these events.

The RDG is also working with partner organisations such as PKD International, The European ADPKD Forum, the Ciliopathy Alliance and FEDERG (European Federation of Inherited and Rare Renal Patient Groups). These groups have considerable experience in empowering and informing ADPKD families.